Jasmine Goldband | Tribune-Review - Sharon Herring-Turner, 61, of Perry Hilltop — a stage two breast cancer survivor — has a mammogram in Allegheny General Hospital. 'It was more devastating to see my hair come out, more (devastating) than the cancer. But I dealt with it because it's more important to have my life than worry about my hair — plus, my hair will come back,' Herring-Turner said.

Jasmine Goldband | Tribune-Review - Sharon Herring-Turner, 61, of Perry Hilltop — a stage two breast cancer survivor — grips her daughter's hand as an IV is started before undergoing a partial mastectomy at Allegheny General Hospital. 'The physical pain-it doesn't bother me. I have a high tolerance for pain and I can take it,' she said. Dori Wallace (left) CRNA (certified registered nurse anesthetist) and Dr. Florin Orza (who is starting the IV), both are from the Anesthesia Department at AGH.

Jasmine Goldband | Tribune-Review - Sharon Herring-Turner, 61, of Perry Hilltop, finds relief from an ice pack on her right side hours after undergoing a surgical procedure called a re-excision. The procedure, common following an initial mastectomy, reduces the odds of recurrence.

Jasmine Goldband | Tribune-Review - Darshell Bennett, 39, of Penn Hills undergoes a bone mass density — or DEXA — scan in Forbes Regional Hospital in Monroeville. 'When you get cancer, you have to have a backbone,' she said.

Jasmine Goldband | Tribune-Review - Kayla Baker, 20, of the Hill District had a tattoo created in honor of her mom, who fought breast cancer.

Breast cancer is more likely to appear in black women under age 40, according to the nonprofit Komen foundation. Struck by such disparities, the Tribune-Review worked since March to explore trends and the research addressing them. Though men can contract breast cancer, women comprise most patients and survivors. Their stories are critical to fostering awareness and education, Purcell said.

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Minnie Ruth Stoutamire wasn't much for physicians. Like generations of black women leery of medical experiments, hospitals making money off human suffering and coarse bedside care, she just did not trust doctors.

Even Stoutamire's breast cancer couldn't change that.

“There was a lot of fear,” said LaVerne Baker Hotep of Turtle Creek, who was about 12 when Stoutamire — her mother's friend — died at age 42.

“Still, there was very little talk about it. … All I knew was, a woman so young, so beautiful, was suddenly gone.”

Black women suffer the highest breast-cancer mortality rates in the United States. Despite two decades of progress in diagnostics and treatment, national studies show death rates from breast cancer are 41 percent higher for black women than for white women, even though fewer black women develop breast cancer. Scholars are trying to iron out racial disparities. They see potentially interwoven causes, from socioeconomic disadvantages to cultural hurdles and biological trends.

“It's a complex problem that really requires a multipronged approach,” said Adrian Lee, director of the Women's Cancer Research Center at the University of Pittsburgh Cancer Institute. “There are probably many reasons that are causing this.”

A shifting picture

Statistics can devastate or can provide hope. One in eight women develops breast cancer but it's not the leading cause of death for women. Heart disease holds that title, reports the Centers for Disease Control and Prevention in Atlanta. Breast cancer, the most common cancer in women, ranks fifth.

Nearly 300,000 breast-cancer cases are diagnosed each year in the United States — including hundreds in Western Pennsylvania. The average five-year survival rate climbed to 90 percent in the past decade from 75 percent in the mid-1970s, helped by higher screening rates, better treatments and improved accessibility.

Filter those numbers by race, though, and the portrait shifts. The survival rate for white women tops 90 percent, up from 76 percent, but the number for black women remained at 77 percent in 2007, according to a 2012 report from the American Cancer Society.

A recent study of breast cancer in the 25 largest U.S. cities by Sinai Urban Health Institute in Chicago found inadequate availability of mammograms, poor-quality mammograms in low-income areas and uneven access to treatment as leading factors behind racial disparity in mortality rates.

“White women have been able to gain access to improvements in early detection and treatment (but) black women haven't been able to,” said institute director Steve Whitman. Its study found “genetics are a tiny part of this, if they're any part at all.”

Researchers typically want to blame genetics at first for unexplained ailments, Whitman said.

“This moves away from thinking about social issues — which, in fact, we can change — to biological factors like genetics, which we can't change at all,” he said.

Sinai estimated that avoidable deaths from breast cancer each year claim more than 1,700 black American women.

It's risky to distill the issue to easy terms, other experts said. They point to triple-negative breast cancer, an aggressive and tough-to-treat form that disproportionately affects black and younger women.

As many as 30 percent of breast cancers in black women are triple-negative, though the percentage in all patients is 14 percent to 20 percent, Susan G. Komen for the Cure reported. The death risk from triple-negative cancers can be three times higher than with more common cancer types, according to the journal Cancer.

Socioeconomic and cultural elements could play a role in who gets cancer, said Lee, who researches triple-negative cases. Some research connects breast feeding and early pregnancy with lower breast-cancer rates; other studies link dense breast tissue and fat-rich diets with higher incidence of cancer.

“I think it is a disservice for women, especially African-American women, to simplify this story too much,” said Dr. D.L. Wickerham, chief of cancer genetics and prevention at Allegheny General Hospital in the North Side. “It isn't an easy fix.”

Lingering legacies

The best medical care, even when readily available, won't reduce breast cancer deaths if hospitals can't get women in the door.

The four-decade Tuskegee syphilis experiment, in which the government misled hundreds of poor black men in Alabama, ended just 40 years ago. Participants believed they were receiving free health care; in fact, federal workers monitored how untreated syphilis could ravage the human body.

That remains “one of the lingering legacies to cause many people of color, especially African-Americans, to be leery of any kind of medical or clinical trial that could be viewed as experimental,” said Valerie Rochester, program director at the Black Women's Health Imperative in Washington.

About 22 percent of participants in UPMC breast-cancer therapeutic trials in the past two years are black, said Dr. Nancy E. Davidson. That outpaces the proportion of black women seeking breast-cancer treatment in Pittsburgh, a national hub for research into the disease.

“That is a wonderful representation,” said Davidson, director of the University of Pittsburgh Cancer Institute and the UPMC CancerCenter. “We want to make sure we maintain this.”

All patients in the trials receive care, officials said.

Outside of trials, however, a third of black women recommended for chemotherapy may not undergo their full treatments, a published study suggests. The study, noted in 2005 by the American Society of Clinical Oncology, focused on early-stage cases of breast cancer.

A separate 2006 study in Pittsburgh found black women often felt isolated as cancer patients and confused by doctors' explanations, said Margaret Q. Rosenzweig, an associate professor at Pitt's School of Nursing.

“One of the really important findings is regardless of income, African-American women didn't really feel they were welcome or part of medical oncology clinics,” she said. “They would say, ‘There's no one here who looks like me.' ”

An American Cancer Society study at UPMC is trying to improve chemotherapy follow-up rates among black women. The program includes a spiritual element, something excluded from traditional doctor-patient consultations, researchers said.

“You have to be your own advocate,” said Sylvia Lowery-Lewis, 59, of Highland Park, who underwent chemotherapy, radiation and a partial mastectomy.

Pitt researcher Jacqueline Simon, who is black, said a black woman might not question doctors' authority but a white woman “would be more aggressive, more in tune with what she needs to know.” A black woman, she said, “would be more submissive ... and not really find the reasons for the recommendations.”

As leaders of their families, they may care for others before themselves, Simon said.

“Frankly, if you have a pretty stressful life, looking for cancer is probably not on the top of your list,” she said.

Improving care

Lowering death rates demands commitment to medical research, social change, education and cultural awareness, activists and doctors agree. The fastest and most effective way to lower mortality rates is to address socioeconomic gaps, Rochester said.

“I think those may be the most prevalent and most relevant” factors, she said, citing unequal access to screenings, such as high-end digital mammograms that detect smaller tumors, and treatments.

Nonprofits such as the Komen foundation, American Cancer Society and Adagio Health make mammograms available in Western Pennsylvania.

Data from Komen show black and white women receive mammograms at roughly the same rate, but access to follow-up care after an abnormal mammogram may be unequal and the quality of mammograms can vary by facility.

Pittsburgh researchers say the focus is shifting to targeted medical treatments and prevention. They urge women to ask doctors about clinical trials.

“Only through research will we improve care,” Lee said. “We need participation to do it.”

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